In Sweden, 1.3 million inhabitants support or care for a relative or significant other on a regular basis. One in four older people (65+) and a third of adults in paid work (45-64 years) are informal carers providing practical help with activities of daily living, supervision, social stimulation and company, help with contacting authorities, personal care and more. ‘Ageing in place’ policies and targeting of home help services for those older people most in need has meant that informal carers increasingly bear the brunt of care. It is recognized that as caring responsibilities increase in intensity there is a corresponding negative effect on informal carers’ mental and physical health. There is a growing awareness of the need to provide timely support to informal carers and to recognize and actively involve them as ‘co-experts’ in the care process. However, many existing carer support services lack evidence as to their efficacy and there are calls for more individualized, flexible services that better meet the needs of informal carers at different points in time. The use of Information and communication technology (ICT) to provide more responsive support for informal carers of older people is increasingly being recognised as a potential solution with the ultimate goal of enabling ‘ageing in place’ (Magnusson & Hanson, 2012).
Aim: To ultimately enable the person with HF to live at home for longer with the support of their informal carers and in partnership with health and social care professionals.
Method: The project will be carried out in two stages. Stage I will consist of development and feasibility testing followed by Stage II: an RCT study. The first stage involves four phases: an exploration of users’ needs, development, field testing, and refinement. A co-design methodology will be adopted, building on the ACTION design model in which carers together with researchers are involved in the design process. During the second stage, an RCT will be carried out in which carers are randomly allocated to the developed web based support program and standard support services (control).
Impact: Given the vital role played by carers in the support of persons with HF living at home, it is essential that there are effective and responsive support services available to meet their needs for information, education, information and support to enable those carers who wish to continue caring to do so. In the RCT study, we will study if there is a positive impact on the following variables within the web based support program compared to the control group: preparedness for caregiving, rewards of caregiving, caregiver competence, perceived social support and health.
What is new: This project marks a paradigm shift in that informal carers are seen as active partners in care and the intervention is intended to help them become co-experts with regard to their caring situation together with the older person and in collaboration with health and social care professionals